Notes from a 50+ Year Diabetes Survivor

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About five years ago, I stumbled upon an industry of psychologists who promoted the many benefits of gratitude. Citing studies that show that grateful people are happier and healthier, they recommended keeping a “gratitude journal.” I tried but it didn’t work. I rarely had a palpable, physical experience of gratitude, just didn’t seem to be built for it. But lately, while planning a blog on diabetes and mulling over its impact on me, I have found it easier to give thanks. One gift of a chronic disease is that it yields a trove of people and incidents that can be used to prompt real gratitude, raw material for a quickening of the heart.

In the summer of 1977, when I was 23, I washed ashore to my parents’s house in Woodbridge, Connecticut after spending my first year out of college teaching in the Caribbean. I had a broken ankle, memories of a romantic affair that had gone very badly, no clue about how to earn a living and frequent visits from what Churchill, my second favorite depressive after Abraham Lincoln, famously called the “black dog.” During my first week in Woodbridge, I had some furious arguments with my stepfather. His dry cleaning business was failing, and he was as glum as I was about the universe. So he was understandably unable to welcome the sulking, semi-grown-up step-son sprawled on his living room couch. (more here)

Elliot Joslin’s life ended on January 28th, 1962, a few weeks after I checked into Babies Hospital in New York City and my life with diabetes began.

Joslin literally wrote the book on the disease (the Joslin Guide To Diabetes, a popular guide for decades) and founded the Joslin Diabetes Center in Boston. He was well known for his fierce insistence on relentless, tight blood sugar control as the key to staving off diabetic complications. Not all clinicians agreed with him, but I’m fairly certain the diabetes clinic at Babies Hospital took its cues from the Joslin group in Boston

It was only after reading Cheating Destiny – Living with Diabetes, by James Hirsch, that I began to fathom Joslin’s influence on my psyche. Hirsch notes that Joslin had roots in Puritan New England, and that one of his ancestors was sentenced to death during the Salem witch trials. On Joslin’s office wall hung a picture of John Wesley, the founder of Methodism, who believed “each man could control his own fate through faith in God and virtuous conduct –a message of personal responsibility that Joslin would impart to his patients.” So he drilled into caregivers and patients the notion that diabetes “was not strictly a metabolic disorder but a profound moral challenge that tested the character of its patients…While he praised those who successfully managed their disease, he faulted others for their own demise.”

In other words, he helped to keep many people alive…and somewhat miserable. I greatly admire the the current Joslin Center, whose staff no longer follows their founder’s judgmental approach (please don’t be mad at me, Joslin team, this is not about you!). But I believed, during that week in the hospital, that I was a soldier in a war for my own life, and that it would be my fault if I lost that war. That metaphor came, in part, from “Combat,” a great TV show about World War II, and while in the hospital I tried to pretend that I was Kirby, a soldier who was my favorite character. But even without that show, thanks to Dr. Joslin and his disciples, it would have been easy to persuade myself that I was in a war zone. (more here)

Yay, I’m here now, more than ever, and feel like I am living an actual life. But for long swaths of time, especially when the black dog of depression visited, I did not feel wholly alive, watched myself from very far away, and the world seemed veiled, as if behind a scrim that creates special effects in a theater.

According to the psychiatric manuals, I had a combination, of “derealization” and “depersonalization,” coping mechanisms people use to distance themselves from despair or anxiety.

That is one of the reasons I hesitated to dive into permanent relationships and to have kids. I didn’t want to be a psychological fraud, an emotional huckster who would be forced to feign not just love, but the sense of being alive and present, to those who needed me. Before I met my wife-to-be 27 years ago, Dr. S, one of my better shrinks, pointed out that there was obviously someone real, an actual Dan Fleshler, who felt moral compunction about pretending to be real. “Where does that come from?” he asked. “Who’s feeling that? Where’s Dan?”

Excellent question. There is no doubt that someone somewhere felt pleasure from the feel of his wife-to-be’s soft skin, and the love she kept expressing, her own bewildered amazement that she was happy and alive when he was with her, and the spectacular, hot lighting storm on Mobile Bay outside of the hotel terrace when he finally proposed to her. And certainly someone somewhere was moved to tears at the sight of his day-old daughter in a bassinet.

But too often pick-your-pronoun did not feel like he was here, (more here)

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In a fine essay about Type 1 diabetes, Riva Greenberg conveys how much mental energy is necessary to “stay between the lines” –e.g., keep blood sugar within the narrow range displayed on her continuous glucose monitor:

If you met me…you would have no idea that half my mind space is not free, like yours. It’s busy doing what it needs to do to stay between the lines: guessing at the amount of carbohydrates in my meals, then checking my blood sugar to see how well I guessed. If not well, taking another injection or eating.

Or I’m preparing and drawing up my shot of insulin, also guessing at the dose, and remembering where on my body I took my last three injections so I don’t inject in the same place which can cause scar tissue.

Or I may be switching my syringes, checking my stock of pen needles, putting on a new sensor, ordering more supplies, and feeling my blood sugar plummet when I only meant to lower it a small amount. Then berating myself for over-compensating…

…That’s why the simplest I can put it is Type 1 diabetes is staying between the red and yellow lines all day and night, every day and every night.

Well said. What’s more, the incessant chatter that dominates the inner life of people with diabetes (PWDs) can feel like a terrible burden. Much of the time, nearly everyone has what some meditators call a “monkey mind,” which leaps constantly from one thought branch to another, one feeling to another. But if you are an insulin-dependent PWD, you have many extra branches for your monkey mind to grasp, and it is generating more noise, more instructions, more screeching, than the minds of non-diabetics. And you feel like you need those branches in order to get through the day. Greenburg conveys a distinct sense of being embattled, grim and weary because of this, which I’ve often shared.

One way to ease this burden, like every other burden, is to laugh. Chuck Eichten offers an uncannily accurate picture of a PWD’s inner babbling about food when things are not going smoothly on the metabolic front: (more here)

Vital signs

What’s going on? After more than 50 years with Type 1 diabetes, I am not only still here; thus far I have none of the dire complications I’ve been hearing about since I was a little kid. By ticking off all the things that aren’t wrong with me, I don’t mean to brag, but to convey a sense of astonishment:

“Whatever you have, they should bottle it,” said my ophthalmologist during a recent check-up. He said there is no hint of diabetic retinopathy in my eyes. That is a leading cause of blindness in the U.S.

People with diabetes (PWDs) are at least twice as likely to develop cardiovascular disease as people without it. The odds against me are stacked even higher because of family history: my father died suddenly of a heart attack when he was only 40. His father died of a heart attack at the age of 53 (it was his third). I’m 59. My body shows no traces of cardiovascular problems. Why am I here at all?! (more here)

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Thinking with the Bodymind

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Attention: I am not a doctor or a trained diabetes educator. This site is not intended to provide medical advice. If anything written here prompts you to think about changing your approach to your health care, please do not make any changes without first consulting with a physician.